‘They said, let’s teach you how you are going to care for the child at home…’: caregivers’ and healthcare worker’s perceptions and experiences of post-discharge preterm care in eastern Uganda

Abstract Background Complications of prematurity are the leading cause of neonatal mortality, and the majority of these deaths occur in low and middle-income countries. Research in these settings has focused on improved outcomes for preterm infants in hospital settings, however, research into the continuation of preterm care in the home after discharge from a neonatal unit is limited. This study examines the experiences and perceptions of caregivers of preterm infants during the initial weeks following discharge from a neonatal unit in Uganda, and the views of healthcare workers (HCWs) on the ability of caregivers to cope. Methods This qualitative study used multiple data collection approaches, namely focus group discussions (FGDs), in-depth interviews (IDIs), field observations, and case studies to explore the perceptions and experiences of providing care to preterm infants post-discharge from a neonatal unit in eastern Uganda from the perspectives of caregivers and HCWs. Results We recruited 39 participants with a total of 35 separate sessions including 18 IDIs (12 caregivers and 6 HCWs), 3 FGDs (17 caregivers), and 4 case studies (14 separate IDIs over 5 weeks after discharge, three mothers, and one grandmother). IDIs and FGDs took place at the Mbale Regional Referral Hospital or in participants’ homes. Key themes emerged; preparation for continuing care in the home, psychosocial challenges to providing preterm care in the home, barriers to continuing preterm care in the home, and suggestions for improvement of preterm care in the home. Caregivers had good knowledge and awareness about different aspects of preterm care. Following discharge, caregivers struggled to maintain quality care due to loss of continuous support from the neonatal team, feelings of anxiety and isolation, financial issues, and home responsibilities. Conclusion This study highlights multiple challenges to continuing preterm care in this Ugandan setting. Improved training and education for caregivers, especially in neonatal resuscitation, enhanced and continued support of the caregiver and infant in the home, and increased community involvement following discharge may all be key solutions. These findings are fundamental to improving care in the home for preterm infants in eastern Uganda and similar settings

Acceptability of a new 4-in-1 Abacavir/Lamivudine/Lopinavir/Ritonavir paediatric fixed-dose combination: the caregiver–child dyads’ perspective

Background: Worldwide, 1.7 million children younger than 15 years were living with HIV in 2021. Only 52% of them had access to antiretrovirals (ARVs). Lack of age-appropriate ARV formulations (i.e. easy to swallow for young infants, acceptable taste) remains the main obstacle to the access to ARVs. Therefore, a strawberry-flavoured Abacavir/Lamivudine/Lopinavir/Ritonavir (30/15/40/10 mg) fixed-dose combination of granules in a capsule (4-in-1) for children living with HIV weighing 3–25 kg was developed. Objective: We assessed caregivers’ perceived acceptability of the 4-in-1 compared with previous paediatric ARV formulations and factors influencing acceptability. Methods: This exploratory qualitative case study embedded in a phase I/II, open-label, randomized cross-over pharmacokinetic, safety and acceptability study (LOLIPOP) was conducted in three sites in Uganda (May 2019–October 2020). Thirty-six children weighing between 3 and 19.9 kg participated in the main study. We purposively sampled caregiver–child dyads according to weight bands, and conducted 20 semi-structured interviews with caregivers and 5 with healthcare providers. We triangulated these results with a quantitative acceptability questionnaire. We analysed interviews inductively using NVivo12 adopting a thematic analysis approach and acceptability questionnaires descriptively to assess concordance between them. Results: All caregivers found the 4-in-1 formulation highly acceptable and easier to use than previous formulations (i.e. pellets/tables/syrup). Appealing taste, ease of administration, easy storage and children’s acceptance contributed to acceptability despite structural challenges of food shortage and HIV stigma. Visible improvements in children’s health and comprehensive and tailored healthcare provider support to overcome initial difficulties such as vomiting increased caregivers’ acceptance. Concordant results from questionnaire- and interview-data confirmed high acceptability. Conclusion: Caregivers of children in all weight bands in this sample found the 4-in-1 granules highly acceptable compared with the pellets/tablets combination. Healthcare providers’ support to caregivers allowed for individual tailoring of drug administration despite challenges such as food shortage. This enabled short-term adherence. These findings informed further practical recommendations. Registration: Clinical trial number: NCT0383683